Medical advocacy is crucial for young women but it can feel like a 'catch-22'

At 11, Emily W hadn't even had her first period when she began feeling pain in her lower stomach and back.

Her family initially dismissed it as growing pains, while doctors thought she might have had irritable bowel syndrome.

A few years later, she was put on the pill — something she describes as a "shut-up remedy".

The pain wasn't cyclical and it continued to wreak havoc on her life.

"I struggled to walk. I struggled to laugh," she recalls.

"The condition itself causes fatigue, but then walking around, it's like you're walking with a 20-kilogram backpack.

"Every step takes five times the effort."

Instead of getting a diagnosis and a plan to treat her pain, Emily was branded as "anxious" by the health professionals she consulted.

"On all my referrals to specialists, there was: 'Emily is a lovely lady with proficient health anxiety,'" she remembers.

"Because I would come out and say: 'I think I have this,' I was told I had health anxiety.

Health anxiety, or hypochondriasis, is the excessive fear of becoming seriously ill.

But this wasn't true of Emily W.

About five years after her pain started, doctors discovered during surgery she had both endometriosis and adenomyosis during surgery.

Emily M has a similar story with her POTS diagnosis.

"Remember how women used to be accused of hysteria?" she asks.

"I think the new hysteria is anxiety because every single time I went to the doctors, they had me take the [mental health self-assessment] test."

Lucy Savage was just nine when her endometriosis symptoms started.

She's experienced countless similar stories. 

At 15, she was lying on the gym floor, unable to stand and about to pass out from pain.

But when she went to her doctor with a list of symptoms, including severe mood changes, she was told she had normal teen angst.

In the wake of the Four Corners investigation into a Melbourne gynaecologist, these young women shared their experiences of healthcare-related gender bias or discrimination. 

They are representative of more than two thirds of Australian women who say they are routinely dismissed by healthcare professionals. 

Now, they're encouraging others to stand up for their health.

'Fighting against a doctor's ego'

"Historically, women's pain has been ignored," said Jean Hailes for Women's Health CEO Sarah White.

"It's really common for women with pain conditions to be prescribed antidepressants instead of pain management," Dr White said.

Emily W said the difficulty for people suffering from unexplained, chronic pain was that feeling anxious was a normal response to their situation.

"It's a catch-22," she said.

Emily said she felt undermined and frustrated as a teenager seeking answers about her condition.

"You try and advocate for yourself and you're literally belittled," she said.

"It just feels like you're fighting against a doctor's ego and a system that's supposed to be there to help."

Emily W struggled to get an obstetrician-gynaecologist referral from her doctor. 

When she finally got to see a specialist, they recommended surgery within minutes — something she had previously been told she was too young for.

"I remember I just sank into my chair and the weight came off," she said.

Evidence is mounting to show how common Emily's story is among Australian women. 

A 2025 Victorian inquiry into women's pain found 71 per cent of those who responded said being dismissed by medical professionals was a major health challenge. 

Global studies have shown women face longer waits to be diagnosed with cancer and heart disease, and are less likely to be offered pain medication.

Peer-reviewed research suggests women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease.

Conditions dismissed, research lacking 

Research into how young women specifically face these obstacles is limited.

Still, Dr White suggests younger women might face a "slightly patronising" attitude: "An almost patriarchal, 'There, there little one.'"

She said there were several reasons why women's pain might be dismissed. Up to 70 per cent of chronic pain cases are women, but about 80 per cent of pain studies are conducted on male subjects, Dr White said.

Women were also "fundamentally wired different" — not more fragile, she said.

"Females have a higher density of some nerve fibres," Dr White said.

In the case of POTS, women are about five times more likely than men to be diagnosed with the condition, but there's little concrete research as to why.

Seventy per cent of people with POTS also report that symptoms were initially dismissed as anxiety.

Emily M said it could make diagnosis incredibly hard.

Her doctor told her she had low iron repeatedly.

Her iron level improved with supplements, but her constant light-headedness persisted.

Anything from standing still for too long to a hot shower could cause a flare-up.

Even standing for a science class made her heartbeat hit a rate of more than 100 beats per minute.

She remembers leaving that particular lesson after her teacher told her she was lazy — only to be further dismissed by office staff.

"Hey, my heart's really high," she remembers telling them after looking at her smart watch.

She said the moment was emblematic of the misunderstanding POTS sufferers faced, and how her anxious personality became the focus over genuine health concerns.

"In times where I'm just standing there — and I have no reason to be anxious — I don't know why my body's doing this."

Emily M eventually fought to have her heart rate measured. 

When a "not normal" reading appeared, she was almost relieved. 

"It's not just me and my watch."

'We can't do anything for you'

Lucy has seen firsthand how medical misogyny can place women in emergency situations. 

After her keyhole surgery — which uncovered endometriosis, adenomyosis, polycystic ovary syndrome, and defects to Lucy's womb — she was given a hormonal IUD. 

It was an option with risks she believes were not properly explained.

Lucy's body rejected the IUD, causing labour-like contractions.

"The next five days I didn't eat, I didn't sleep, I didn't do anything," she remembers.

"I was in three ambulances … and over that time there were male overnight doctors who said, 'You're just constipated, we can't do anything for you' and just sent me home."

After several nights of emergency visits, she had a female doctor who believed the pain was caused by the IUD, and eventually removed it.

"It was the most painful thing I've ever gone through but she was incredible," Lucy said.

Lucy now lives with POTS, which she said was caused by the physical trauma of the incident.

Slow shifts for GPs

Magdalena Simonis, associate professor and women's health expert at The Royal Australian College of General Practitioners (RACGP), argues the sector is slowly changing, though there was still a need to look at how GPs holistically approach chronic pain. 

"What the reviews have indicated is patients feel that they haven't been listened to by some," Dr Simonis said. 

"So when a person says, 'I have pain that doesn't go away,' rather than assuming that it is an imagined problem or a psychological problem, we need to ask: 'What more can I do for this person?'

"'Where can I refer them to?'"

Despite the experiences of so many young women, there are reasons to hope.

In 2018, the National Action Plan for Endometriosis was launched.

Dr Simonis credits it with ringing the "alarm bells" on the industry's gendered failings.

Prior to the national plan, endometriosis sufferers faced significant diagnosis delays due to specialist backlogs.

Now GPs are more empowered to investigate from the start.

"Once upon a time it was if you suspect endometriosis, you've got to refer them on immediately," she said. 

"We have more at our fingertips now as GPs that we can try to support our patients while they're waiting for that referral."

Having the confidence to say no

Dr White encouraged patients to advocate for themselves: "It's about giving women the knowledge, the skills and most importantly, the confidence."

"This is particularly true for young women," she said.

She said concrete examples could help when patients were advocating for themselves.

"The doctor is going to get a much better sense of impact if you're able to say to them this pain stops me from working well, this pain stops me from exercising, or this pain stops me from sleeping."

She also recommended keeping a pain diary, or asking doctors to note why they've decided against treatment options. 

Emily W has found her public journey has helped other classmates question their healthcare options.

"They're very vulnerable about these private symptoms that they're having," she said.

She tells people to bring a parent to doctor's appointments.

Lucy started XOXO, Endo, a platform focusing on regional endometriosis education and awareness.

Last year, she held her first "endometriosis evening" in her home town of Mount Gambier and hopes to empower others.

Those who came heard from medical professionals and young people with the condition.

"Endometriosis is so hard to diagnose; every single case of endo is so individual and every symptom is so individual," Lucy said.

"I want people to be able to listen and go, 'That sounds like me, maybe I'll check that out.'"

She is also studying to specialise as a woman's health nurse, taking inspiration from those who cared when others didn't.

"When I had my laparoscopy [keyhole surgery], there was a nurse who stayed later than her shift finished to sit with me in the ICU and hold my hand and stroke my hair," she said.

The ABC's Heywire competition is open to all regional Australians aged between 16 and 22.

The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to "tell it like it is".

If you are aged between 16 and 22 and would like to find out more about the ABC Heywire Competition, go to the ABC Heywire website.